Belated Happy New Year!

Wellllll.... I guess "blog bytes" didn't work as well as I'd hoped. There's no way of getting around being too busy to think, I guess, no matter how many tricks I try...

In retrospect, I think we did more than just survive the holidays, this year, which is a very good thing! We went into the season (beginning early in December with Hanukkah) knowing that there was a lot on our plates: mummers play at church, Brendan's annual holiday gift project, the usual preparations (wrapping, decorating, cooking), gifts for teachers, getting ready for New Years, spending time with friends & family, & a particularly busy patch with the minister search I'm involved in at church... and we did it all & had fun, too! We have evolved, over the years, ways to help minimise Brendan's anxiety at holiday time (for example, he gets to choose which big lego set he gets for Christmas) & it was particularly helpful this year because he had a precipitous rise in anxiety a couple of weeks before Christmas (not related to anything that anyone can identify). It was one of those (rare) occasions when his fears become so intense that he hurts himself & we wonder if we're going to be able to keep him safe. We had taken him off clonapin last October because he was doing so well, anxiety-wise, but we still had some in the house, & Brendan was sufficiently aware of himself that he agreed readily to take one when we suggested it might help, & it did help. He ended-up with just some broken capillaries in his eye (just...) & we were fortunate to be able to see his psychiatrist the next day. He suggested that we continue with the clonapin through the holidays, to take the edge off & help Brendan weather this new, higher level of anxiety, & then we could re-evaluate in January. I had started a "tic-log" at Brendan's psychologist's recommendation, since we'd noticed that anxiety-related tics had been getting more frequent, & we're hoping that we'll see some sort of pattern to guide us... The biggest concerns are whether this is a "blip" or a sign that Brendan's pre-adolescent body changes are making the medications work differently. Brendan & Charlie & I have discussed these possibilities a few times in the past few weeks, laying groundwork for any changes that we may need to make as he gets older. One of the most amazing things about where Brendan is at developmentally is that he can now tell us what's going on internally when he has severe anxiety, & identify what helps & what doesn't. He's made us aware that giving deep pressure can help when he's particularly anxious & has actually been requesting deep pressure (usually by pressing down firmly on his shoulders when he's standing or sitting) when he's feeling increased anxiety. It's made us aware that his sensory needs seem to be increasing as he gets older, so we've been talking to "the team" (psychologist, OT...) about what we can do. One night last week he seemed headed for meltdown again at bed time & Charlie hauled the foof chair (like a beanbag chair) into his room & plopped it on him, which not only made him laugh (the thing is really big... like his old ball blanket on steroids :) but relaxed him almost immediately. (We took it off after he fell asleep...) We really are in a new phase- Brendan as an individual & us as a family. He's even more a member of his team, & we are deeply glad to have his insights into himself to guide us.

Highlights of the holidays:

The mummers play at church- although the main rehearsal was cancelled due to a snow storm- went very well. Brendan played a shooting star :) He was wonderful. He managed to make the shooting star funny & touching without saying a word.

His holiday gift project (which I talk about in this post in Jedi Workshop ) was a big hit with his recipients & with him. He made his own style of "omamori", which are Japanese-style good-luck charms. Brendan chose the beads & made them almost entirely himself. He found the activity calming & satisfying. He would sit with the finished "omamori" in his hand, thinking good thoughts about who it was intended for, & it really grounded him.

Christmas was a lot of fun. Brendan prepared Rufus' stocking on Christmas Eve & had a great time sharing it with Rufe the next morning :) He thoughtfully put a banana, an orange, & some grapes into it (good for mole rats :) We had our annual Christmas tea & happily depended on others to bring or provide (a few of Charlie's patients always give us cookies) a lot of the food. We had a fun cookie-baking day right after Brendan was out of school & invited our friend, Alden (music director at our church & college student), to bake with us, so we did have some of the necessary traditional family delicacies on hand. There were 10 of us for tea, although Brendan did his usual parallel-play version, happily roaring around in the kitchen with his Christmas lego (its 1000-plus pieces already put-together by our lego-maniac) while we had tea in the next room.

The picture at the top is of this year's "osechi ryouri" which is New Year's Food, Japanese-style. We celebrated Japanese New Year last year, too, so we upped the ante by cooking more food & actually filling all 3 layers of the "jubako" box (unlike last year, where we only were able to fill 2...). Our first Japanese teacher, Tomoko, who is now in graduate school in Minnesota, was here for the holidays & mentored me through the cooking process as she did last year. Her mom, Nobukosan, whom we stayed with for a week last summer during our visit to Japan, sent us a box of the important things you can only get in Japan :) We called her by internet phone on New Year's Eve, too (it was already tomorrow for her), which was so exciting that most of my Japanese went right out of my head & I could only keep repeating "akemashite omedetou!" (Happy New Year!). Brendan did much better, speaking in full sentences, much to everyone's delight (& my envy...). I had such a great time cooking & chatting with Tomoko- it felt like I was absorbing her presence as much as I could because I've missed her so much! We have been so lucky to find a wonderful teacher to take over for Tomoko, Shizuka, & it was great fun to share the New Year's celebration with she & her husband, too. Grammie joined us as well & we played all sorts of games after eating the "osechi", "ozoni" (traditional soup), & obligatory "mochi" (sticky rice paste). Brendan enjoyed the games & friends, but decided that his "osechi" this year would be ramen... :)

So... now we're navigating post-holiday, back-to-school, back to regular life. Brendan's anxiety has risen again & we're presently sorting out how to help him manage increased homework demands which are making home life rather miserable these days. He's stuck between feeling like he has to do it (what will people think if he can't? what does that mean about him?) & needing the downtime at home to recover from just being at school. We've been taking the tack of reminding him that his needs as a person on the spectrum don't necessarily change just because the demands of school are changing, & then repeating this message clearly at school. Sigh. We are lucky to have a gem of a school for Brendan, but things do fall between the cracks sometimes... It's clear that Brendan is struggling with wanting to be independent & yet needing our help & input still. We are trying to figure out how to help him without taking away his independence- this is no doubt the tip of the iceberg when it comes to dealing with the adolescent Brendan that is appearing before our eyes. I am caught between amazement & awe at the person I see unfolding before me, & utter frustration as half or more of what I say to him is misunderstood... We both decided yesterday that we're not easy people to live with & are not sure how dad/Charlie manages to live with us. Probably because he loves us :)

Moving back into the groove...

Hi All...

Sorry for such a long hiatus! We really are doing well, & I'll elabourate further in a moment... Things just became busier than they've been in a long, long time, hence the blogging break. Right before we left for Japan (last June) I agreed to be on the search team at my church that is going through the process of finding a new minister, ours having left in May to become an army chaplain. The way we Unitarian Universalists do things is to find & call ministers ourselves, the process being facilitated by the denomination with guidelines & an online matching service. I've been a member of my church for nearly 30 years & have observed this process 3 times before, but never been in a life stage where I could participate actively, so I'm really psyched to finally be part of it. It's intense, though. Like having a part-time job... I'm actually anticipating an imminent OS upgrade (like, this evening, I hope...) so that I can use iworks (which I plan to purchase tomorrow) to create & publish the packet we'll be sending to prospective ministers- that's my main responsibility right now (nothing big- ha, ha, ha)... outside of my other church & school activities &, of course, being Jedi mom to Brendan :)

Ahhhh, Brendan! He grew 1 1/2 inches over the summer!!! He's also grown internally in so many ways that are not visible, but are truly wonderful. The school year's gotten off to a great start. He's now one of the 6th graders in his mixed 5th & 6th grade class, & is taking his responsibilty for being one of the "big kids" very seriously. The anxiety management that he learned while in Japan & over the summer have led to a much calmer Brendan, & when the "fleas" do "attack" he can explain them clearly & often requires no intervention in handling them- not even a kekkai (ki) barrier. It's amazing to see him doing it on his own... We've been able to talk through many of his long-time tic-triggers & he's finding creative ways of managing them, such a using imagery, burning incense (we light it for him) to "smudge" the thoughts away, or just burying himself in a book for a while. He's been reading voraciously we've been enjoying discussing the books with him so much! He's worked his way through all of the Charlie Bone books published to date (6 so far) & is on the second of Rick Riordan's series about demi-god kids (it starts with "The Lightning Thief"). I've been pre-reading them so I can really discuss them with him, & enjoying them all very much myself. I also decided to allow him to start reading the manga "Naruto", which was a bit borderline in terms of violence (but no worse than anything you'd see in the LoTR movies- which Brendan has not seen- or even in InuYasha) but is a manga I've been enjoying for a while. I'm so glad I decided to allow him to read Naruto! The basic story is about kids who are training to be ninjas, the protectors of their village & country, & the main character, Naruto, has a very powerful demon sealed within him- a good metaphor for adolescence if there ever was one :) One of the things I like about the story is that the values- looking out for others, finding family in unlikely places, doing your best no matter what- are consistent with my own, & through the manga Brendan is getting these values from yet another source. Also, we've had some interesting discussions about lots of things brought up in the manga, about stereotypes & how they play around with them in Naruto (one of the most powerful ninjas around looks rather like a bimbo...), about how people in the manga feel about fighting (there's quite a lot of ambivalence), about how you can tell how they're feeling by looking at their faces... which is one reason we've been concentrating on reading the manga rather than watching the anime, since the illustrations are static & more easily interpreted by my aspie boy :) One of our more interesting conversations occurred because he was consistantly referring to male characters with long hair as "she"... turns out that he didn't know where to look in order to figure out the gender of the characters, so we talked about the general physical differences between men & women, & how they usually show up in illustrations. A great "teaching moment" :) It probably goes without saying that Brendan will be a ninja for Halloween- he chose the fabric & approved the pattern, so I just have to make it (this week, I fervently hope...).

The bottom line these days is that I have a wholly different kid on my hands! He's clearly moving into adolescence, & doing a fairly graceful job of it (at the moment, at least :). He & Charlie have been spending more & more time together, too, doing dad & son stuff... Brendan re-discovered his interest in sailing about mid-August & took over crewing for Charlie for Sunday racing, even helping him go on to win the summer series. He was dad's only crew for the fall series & they won that one, too :) For the first few weeks of sailing I was having to go down to the club about the time they'd be coming into shore to help "catch" the boat & hold it while Charlie took down the sails & stuff. Brendan just wasn't strong enough to do it... but after about 3 weeks Charlie decided that Brendan could do it- & he did! His hand & arm strength has increased quite a bit & even though he's gotten banged-up a few times (which is just what happens when you race a sailboat, I can testify!) he's hung-in there with it & really enjoys not only the sailing but chatting with the other sailors before & after races. Pretty neat...

I hope to start posting more often, now that we've settled into a routine & I'm getting used to the stress of having the church work on top of the mom work (& figuring out where the Jedi work fits into it all... :). I have started meditating again regularly, which has been a huge help... Mostly it's Brendan's moving to "the next level" that's making life so much fun these days, in spite of the stress. We are getting such a kick out of his insights & his excitement with his accomplishments. Life is very full- I look forward to continuing to share it!

Home from Japan...

Here's the view of Tokyo from our hotel window, our last night in Japan.

In a way, I suppose it was a good thing we didn't know how gruelling our trip home would be. Certainly, the trip to Japan didn't prepare us for how difficult the homeward one would be... However, to be fair, there were absolutely no hitches in plane flights or luggage & none of the many things that could have gone wrong did, so we were really, really lucky!

We were up pretty early Monday morning & had a nice breakfast in the hotel restaurant, then finished packing & had some time to lounge & get our last NHK public tv (home of Pythagoras Switch) fix before calling for a cart to take our luggage to the airport shuttle bus station right next door. We got our tickets & were on the shuttle within 10 minutes for the hour-long ride to Narita Airport. It rained on & off & was quite reminiscent of our ride into Tokyo, nearly 3 weeks before. We saw the sights we'd seen on the first bus ride with new eyes...

The bus porter had told us which stop to get off at & we had about an hour until we could check in, so Charlie & Brendan wandered (& finally got Brendan one of those vitamin drinks in little bottles he'd been angling for the whole trip, because it was his last chance :). Check-in, immigration, & security were a breeze- in Japan you don't have to take off your shoes or take the laptop out of the case, so there's so much less fuss, & there were hardly any other people in line with us. There was about an hour before our flight, so we hit a bookstore for last-minute purchases (Brendan has a natural homing instinct for Kamen Rider Den-O books :), for more distraction on the flight. And... we finally ate at a japanese McDonalds :) Yes, the fish sandwiches taste much better there... (naturally!)

When we finally boarded the plane we were ready to go, but Brendan & I soon were in tears, as we saw Japan receding in the window. We really want to go back!! We started out by looking at Kamen Rider books & puzzling out the japanese, then Charlie & I switched places & they played Uno for a while. When I looked up from a puzzle book, maybe 6 hours into the trip (we'd had two meals by then), I noticed Brendan had one of his Kamen Rider action figures out (one with millions of little pieces that fall off...) & was starting into meltdown mode. I decided that it was time to switch back & see if I could get him to sleep a bit (Charlie was glad to have a break :). I convinced him to put everything away & cuddle up with his blanket, & soon he was asleep. He only slept about 3 hours, but by then they were serving breakfast & getting generally ready to land in Chicago. In some ways, the time really flew, but in others, it was very uncomfortable & exhausting. I kept figuring out what time it was in Japan... When we landed it was somewhere around 2 in the morning & Charlie & I had done no more than doze a bit during the flight.

Chicago was the worst part of the whole trip, bar none :( Not only did we have to navigate immigration & then pick up our bags & do customs, having been awake for nearly 24 hours, but Brendan simply could not cope with the noise & the crowds by then. He was in so much distress from OCD anxiety in the immigration line (literally hundreds of people all in the same place) that they noticed, took pity on us, & unhooked the guide line so we could go ahead- no questions asked. We got him through the rest of re-entering the US on pure will-power, but then had to take a train (lugging the bags) to another terminal & go through security all over again. American security: with shoe & laptop removal (& the plush Pochama pokemon he was clutching to his eyes had to go in the plastic bucket & through the xray, too). Everyone was very professional & said not a word to us about our distressed kid, which was a huge relief. I even explained to Brendan that, if anyone asked, I would tell them that he was autistic so that they might understand (he said that was ok), but I never had to do it. We sat just outside security for nearly half an hour, getting him back together & Charlie went for cold drinks while we sat. Then we each took an arm & half-walked, half-propelled him to the gate, found a quiet place to sit, & we parked. Brendan lay down on the bench of seats with Pochama & nearly fell asleep, he was so overwhelmed. Charlie & I took turns hitting the restrooms & getting food. Our next flight wasn't for 3 hours, so we had time to eat & recover. Brendan alternated between doing just fine (regained his sense of humour & everything) & overwhelmed mode at the drop of a hat, but we were able to amuse him with more japanese books & making mazes for the pokemon plushies to navigate, using newspapers, shoes, & bags :)

The plane home was a teesy-tiny one, 3 seats across & acessed from the ground & up the stairs on the plane's door. Brendan was fascinated by this new experience, & then fell asleep before the plane even took off. He woke up about 15 minutes before we landed at our home airport. What a blessing!! Our next-door neighbour, Evelyn, who had dropped us off at the airport was waiting for us there- so nice to see a friendly, familiar face after the day+ we'd just had! The bags were there, too, & we got them to the car somehow & were home in 15 minutes.

Home looked really weird. The wrong proportions, the wrong smells. But it started feeling homey again very soon. We were blasted, of course. Evelyn brought over some yummy dinner & Brendan supplemented it with his favourite "no-chicken" soup from a can (tofu intead of chicken :). I called my mom to let her know we were home ok. Charlie got Brendan into jammies & into bed & he dropped off immediately. We unpacked & I decided against starting laundry that evening (that would have been "baka", as Brendan would say :). My hot shower felt so good I nearly cried. We were home & in one piece, & everything was home with us!

Yesterday was "the lost day". We drifted around, doing laundry, sorting through omiyage, putting things away. My body hurt so much I couldn't believe it, probably from hauling heavy bags & sitting on planes for too long (although it didn't feel bad at all when we arrived in Tokyo after the same length trip...). Brendan played AQ, played with his Kamen Rider toys, played games with Charlie, & watched movies. We watched the "Lucario" pokemon movie together, & it even made me cry in japanese... Grammie visited, to see with her own eyes that we were home :) Charlie went into work long enough to pick up an enormous box of mail & forms to be signed. Sigh...

Today we all felt a bit better, although I woke up at 4:15 & never went back to sleep. It was a rainy 4th of July, which, perhaps selfishly, suited us because we had no plans... We started thinking about the rest of the week- making a shopping list for tomorrow, Charlie going through the load of paperwork, he & Brendan taking Japan pictures & prezzies to the neighbours. I found that I couldn't eat when the clock told me to eat & was exhausted by 2:00 pm, so I took a nap. Charlie & Brendan headed out to spend some holiday time with sailing friends & I worked on tidying the house even more & getting caught up for the next few days' activities. I discovered that the newest Kamen Rider Den-O was online so Brendan & I watched it when they got home. This evening, at bedtime, he asked me to read to him (our usual, sometimes gruelling, routine before going to Japan), but I put him off (I was busy tidying upstairs) in the hope that he might fall asleep on his own. I went in after a few minutes & asked him what his favourite parts of the trip were, & he drifted off to sleep while he told me :) I asked Charlie the same question before he, too, went off to bed (although, with the fireworks right now, I can't believe either of them are asleep!!). Here is what they answered:

Brendan says that the best part of Japan was Kyoto, because Tokyo was too "urusai" (noisy), & because, although he enjoyed meeting japanese kids in Mizumaki, he was overwhelmed by their attention. He said he loved visiting all the temples in Kyoto, because the temples helped him to cope with "fleas" (his new term for "tics" :). He said that the calm & quiet, & the purifying wells & prayers all helped him a lot.

Charlie said that he enjoyed visiting the Onsen with Tomoko's family very much, but that his favourite parts of the trip were experiencing a different place, being totally out of our element & our ruts, & really experiencing a different culture. He said the trip to Uji (while we were in Kyoto) felt like our best full day in Japan.

I find myself also dwelling on how amazing it was to be out of our usual routine (for better or for worse) & to see our usual way of living from the outside-in. (I am still having difficulty getting used to people speaking english to me :) We tried so many different things while we were there, some which we would never stretch ourselves to do in regular life, for very good reasons! I was struck by the realisation of how very intense life with Brendan is, & how unrelenting his anxiety can be (& how demanding). And yet, there were times when he was stretched & rose to the occasion beautifully, & I was so heartened by these experiences. It helps me to understand that Brendan is learning & growing, becoming more capable of managing his anxiety everyday. I told Charlie this evening that, no matter what we might do next year for vacation, it will be easier because he's growing & learning. And the next time we go to Japan it'll be easier for the same reason (plus our japanese will be better :). I also find myself more focused on how I want our day to day lives to be, rather than reacting to how it is (because I'm immersed in it). I want to find ways to help Brendan become more considerate of others, even in the face of his own very intense needs. He has mentioned this to me, that he wants to be more thoughtful of others, so I want to find ways to help him. Like Brendan, I really enjoyed visiting the shrines & temples, & I really loved trying to communicate with people in their own language. There were so many beautiful things to see & experience. Another thing that I enjoyed so much about our trip was that there was so much time together as a family. In regular life, we tend to play ping-pong with Brendan, with Charlie at work all day & then coming home to dinner & then giving me a break from the intensity that is "life with Brendan". I take over right before bed time so that Charlie can do paperwork. The he & I sit for a few minutes & reconnect, then he goes to bed & we begin it all again the next day. While we were in Japan we were rarely apart & it felt very natural to do things together- from managing the subways to managing tics. It felt very good. When we weren't under the stress of keeping to schedules & planning our own days, it was really fun to be together, no matter how unevenly things went. I am left feeling really good about our family, & about being the family that we are. Perhaps the best & biggest gift of going to Japan :)

Rhythms of life...

Well, I think that last post really took it out of me... kind of like I've been sucked dry of words. Life is still happening, though. Brendan's had a tough week, with many of the "issues" being very much related to the "gap". My sense is that he tootles along at school pretty well for a while & then, bam!, life expects a bit too much of him. Yesterday afternoon, when I went to pick him up from school, I sat in the parking lot & waited for him to come out (as usual) after waving to him in the 3rd floor window outside his classroom. I waited... & waited... finally I saw him again, with Cherie, talking. He looked rather miserable. I thought I saw him bang his head on the window & decided to get out of the car. Cherie indicated that I should come up. The scenario turned out to be: Brendan saw me in parking lot (at the agreed-upon time), went to get his stuff out of his locker, was intercepted by his classroom teacher & asked to do his pitching-in job (I guess things went late, because they're usually done by the time I get there), & Brendan freaked. Looked at from his point of view, I understand perfectly why he freaked. To my mind, you don't ask a kid with autism to delay end-of-the-day gratification (mom's here. going home!). To his teacher's mind, I suspect, a kid who attended really well in math class & had no trouble today in music class is not triggering "autistic" in her mind, even though she's completely on board with his autism & his needs... So she asked him to do what the other kids were doing. When I spoke to Cherie (Brendan's consultant teacher) this morning I told her that Charlie & I were thinking that one last team-meeting might be a good thing, just to get us throught the last 6 weeks of school. Brendan's changed so much since the winter break- it'll be nice to speak of these things & get everyone on board for where he's at now. In other words, let's get all of his teachers & therapists up to speed with the gap so that the great progress he's been making isn't undermined by escalating expectations. Cherie thought that a meeting was a great idea & will find us a time. The truth is, I read so much dreadful stuff in other parents' blogs about their schools' attitudes towards their children that I feel a bit guilty kvetching even a bit about things like this... Brendan's school & teachers are stellar. And part of the reason is that they're so open the the occasional tweaking necessary to keep things running smoothly.,,

One of the things complicating matters at school is Brendan's circadian rhythms, life-long ones, for up-times & down-times. The down-times make him particularly vulnerable to the OCD thoughts & tics, resulting in fatigue, & circularly, less patience with the OCD. He's in a definite slump right now, so it's been important to structure his downtime as true downtime- no demands. I had been thinking of doing some cleaning in his room with him (gotta make room for all the birthday legos) but realised that there was no way he'd be able/want to participate. I thought about it & realised that re-organising things wasn't going to upset him (re-binning the legos in a logical fashion so that they're out of the way & easier to find), so I went ahead & did it this morning. It was good for me, too. I've been leaving school lately rather depressed, worried about leaving Brendan & about some other things, too, so having a definite, ultimately satisfying job to do really helped. I'm looking forward to showing him what I've done, & seeing what he thinks of actually being able to walk through his room without tripping :) (I'm anticipating a positive response...)

After tidying, I moved on to blog-reading & found myself crying over Estee's recent post (guest-posted) called When What Seems Broken is Perfect (the link to that particular page wouldn't come up, so I had to link to the site instead). It made me think of some of my fears about how my child's life is seen & valued by those outside my family... Happily, I also took the time to listen to the Revolution Health podcast that Kristina posted yesterday at her Autism Vox site- a conversation she participated in (along with some other well-known autism blog voices, such as Autism Diva). It was a great listen & heartening, to boot. Well worth the hour-ish (I didn't time it) of time (I knitted some & braided a headband :).

The weather has been more co-opertive than expected (it was supposed to rain all day, but it's beautiful & sunny right now), so Brendan & I should be able to have what's become our daily walk. He's been quite enthusiastic about walking around the block with me for the past week, so we have good momentum to continue :) It's a great thing for both of us to be doing. We're looking at another really full weekend- japanese lesson, work day at the sailing club, then on Sunday church for all of us & a tea party (school fundraiser) for Charlie & me (Brendan is happier staying home with our goddaughter). It'll be good to have things like going for a walk to anchor us to everyday life.

Minding the gap...

It's a gorgeous, almost post-Spring day today. Brendan was delighted to be able to wear his new, plaid, "nerdy is the new black" shorts to school today (with an InuYasha t-shirt, of course). I feel blessed by his change in attitude toward school, forged slowly over these past months. In previous years he's pretty much loved school, but this 5th grade year has been way beyond difficult for him. It's nice to have resolved so many of our recent "issues"- getting out of the house on time (& with our sanity intact), how to include him in the process of his learning to self-regulate, how to cope with his new braces...

Before entering the blog-o-sphere, about 6 months before starting my own blog in January of 2006, I knew very little about autism in the big-wide world. I had a one close friend with a kid on the spectrum & knew a few others to speak to, all of whom were invaluable resources, along with the professional members of the "village", as we learned about Brendan & life with autism. I had also met some more parents of autistic kids who seemed to me to be lost in their anger & grief, & this was one reason that Charlie & I stayed away from local parent support groups. We had the support we needed & didn't feel the need to contend with those who were in a very different place than we were. Before reading other autism parent blogs, I did not know what "curebie" meant, had never heard of chelation or mercury, was not aware of the vaccine controversy & autism. I did understand intuitively that some parents weren't going to be as accepting of their kids "as is" as we were, but I put that down to my own experiences as a disabled person & my experiences with developmentally disabled children when I was a teenager. In the nearly 2 years that I've been reading, blogging, & commenting in other blogs I've not only learned about the wide variety of perceptions of & attitudes toward autism, but have found a "niche" of my own, that of a supporter of neurodiversity & advocate for the acceptance, not battling or "curing", of autism. It may not be coincidental that, in my learning about my son's autism, I've come to understand myself as someone who is, if not on the spectrum proper, within hugging distance of it. I've learned this by reading what autistic adults have written about themselves & have found them to be the main, invaluable resources for my understanding of what going on in my kid's head, & to understand that I also have some understanding of his autism from the inside-out, too.

Some of the things I've learned online have not been nearly as uplifting & helpful- there are also a lot of angry people out there who feel gypped by the trick nature/vaccines/"scapegoat here" have played on them & their family. People who feel that they did not get the kids they were entitled to get at birth & are desperately trying to fix/change things. People who are violently anti-acceptance & want to eradicate autism & damn the consequences... When I try to look dispassionately at the different viewpoints, I can see how anger & despair can drive people to do irrational things, like put their children's lives at risk by subjecting them to "treatments" that are risky, unproven, & ultimately disrespectful of these children's right to a safe childhood. But as an abuse survivor I find it impossible to condone these acts of violence against children perpetrated in the name of love... I feel very helpless & sad & angry when I read of these thing happening, & that the prevailing voices that claim to "speak" for autism are these same, very conflicted people. In reality, these things don't affect me personally, every day. There are prevailing attitudes "out there" that do affect me, though- I guess it's hard not to internalise some things when you've heard them enough. One of the prevailing attitudes is that there's a hierarchy of "functioning" levels among autistics that divides them as human beings & us as families. It's hard to argue this, in some ways. Life with a non-verbal, minimally "functional" person is going to be radically different than life with my bright, witty, hyper-verbal son Brendan. No question, really. Where I object, though, is when there are subtle (or not) value judgements made about the value & quality of those lives, & the relative ease or difficulty of life with these differently-challenged autistic people. There is a subtle (or not) sense that I am not able or welcome to comment on the attitudes of those who have "lower functioning" kids because my kid is "high functioning". This is not true everywhere, I'm happy to say, & parents like Kristina & Kev, plus many others in the Autism Parents Forum are happy & comfortable sharing & celebrating our similarities, rather than dividing us all along the lines of perceived differences...

The point of all this getting-off-of-chestness is that lately I have been seeing & experiencing more & more of a gap between Brendan's self-desired & developmentally appropriate behaviours (such as making decisions, taking physical & emotional care of himself, & social functioning) & what he really can do... And on top of this, I am feeling somewhat oppressed by a prevailing attitude that raising a "high functioning" child is more rewarding or less heartbreaking that raising a "low functioning one". The truth is, of course, all parenting endeavours reach low points- life is not a bowl of cherries for anybody. Things get more difficult, though, for families with children that society either doesn't understand or rejects outright. Unfortunately, among any minority group there tends to be even more shuffling around in terms of who is "more oppressed" or more worthy of help or pity. I guess it's human nature. I am not really looking for help & definitely not pity. For all the sorrow, I adore my kid & my family just the way he/it is. What I am tired of is the subtle messages everywhere to be "grateful it's not worse" (ie: your child isn't "low functioning"). To be happy that he can "pass" some of the time as "normal"... the brushing off of my perception that his someday going to college & leaving home are not "done deals". So many people think that somehow his intelligence & wit will just overcome his significant difficulties. I look at his & our hard work & realise that perhaps this may not be enough for him to have the sort of life that he or we want for him...

Brendan had a really up-&-down weekend, as you may suspect from this preambling... Saturday we had the first of our newly-rethought japanese lessons (part of the general rethinking going on these days). I'd emailed Tomoko last week with some observations (that Brendan was participating less & less in lessons) & some ideas to revamp our approach. She was very happy & pleased to try some new things, & the result was that we decided that she & Brendan would spend the first half-hour to 45 minutes of lesson on their own, & then I'd either join in or Brendan would go off & do his own thing & then I'd have my part of the lesson. Brendan liked the idea immensely, & they had a lovely time together. I heard him (from my chosen spot, 2 rooms away) speaking & reading more japanese than I've heard in a long time, & lots of giggling, too. Over the past couple of days he's been filling me in on what they did, which has been a lot of fun, since I get his perceptions on top of it all :) Tomoko & I spent most of our time together talking about what I want to concentrate on in these relatively few weeks before we actually go to Japan, & chatting about her mother's visit in May. After japanese was a much-anticipated event- Brendan's best friend's birthday party. Brendan's buddy E likes active, noisy parties with lots of kids, so in the past few years his family has offered for Brendan & E to do something different together to celebrate, a wonderful & much-appreciated gesture. This year, though, the party was at a go-cart/arcade place & Brendan was really keen to go. We figured this was a good sign, & the party was only for a couple of hours, so things would be ok. Of course, things went much longer than anticipated, & there was no way to get Brendan out of there before it was all over. When he & Charlie got home loaded with prizes & tickets (for the next time he goes (!)) Brendan was pretty obviously not himself. He flitted from thing to thing for the rest of the afternoon, from frustration to frustration, rejecting any attempts to help him settle or calm down until, at dinnertime, he melted-down royally. At one point he was clawing at his eyes because of an OCD thought he couldn't get out of his head. It was really scary. He was able to surface sufficiently from his distress after about half an hour that he could take a suggestion for distraction- we offered to watch a movie with him- & it seemed as though a door had opened & he was desperate to get through it. He ran upstairs to the tv room & collapsed on the foof. I put in the new Pokemon movie & told him I needed to get my knitting. After quietly having hysterics downstairs, in relief, I think, I went back up to watch with him. Charlie made soup & milkshakes & brought them up to us. By the time the movie was over Brendan was exhausted & ready for bed. Charlie & I were, too, but we debriefed a bit first, agreeing that the overstimulation of the party was what had set him off, & wondering how we can back him off of events like this just at a time when he's finally, really wanting to participate...

Sunday morning was peaceful, although Brendan mentioned he had a sore throat (Charlie & I both said "aha" in our minds, since being under the weather probably contributed to the meltdown as well). He coped well with some frustration & tic-trigger exposure at church (a real triumph) & afterward Charlie & Brendan went down to our sailing club to fix the boat haulout & eat lunch, while I had a meeting to lead at church. In the afternoon they went to the hardware store & bought a new hammer so that Brendan could continue bashing at his rock, "Goliath". This morphed into playing Uno with the girls next door in the backyard for a while, then just hanging out & playing. Around 4:30 Charlie went up to take a brief nap & suggested that I ask Brendan to come in around 5:00, since he'd have been outside playing for 2 hours by that time. When I started the countdown (10 minute warning, 5 minute warning) Brendan begged to be allowed out longer. he even told me he wouldn't get "over-tired like yesterday" (the kid's thinking, all right...), so I let him have an extra 15 minutes... & that's all it took. From the time he came in he was out of sorts & Charlie suggested a shower before dinner, since he was wet from playing with squirt guns. Brendan went along with it, but at dinner, again, he began melting down. It was more of a minor meltdown, probably thanks to the relaxing shower, but still pretty exhausting. We were able to watch Kamen Rider Den-O online (the new episodes are posted every Sunday) & it was fun to talk about it (it's entirely in Japanese with no subtitles, so there's lots to talk about). Charlie & Brendan decided to read some together & I actually fell asleep on the sofa for a couple of hours, so Brendan was asleep by the time I got up. Again, Charlie tried to figure out what had happened & how to be proactive, but it felt more like hitting a wall...

The thing is, Brendan is in many ways developmentally ready to do so much more- play outside all afternoon, go to birthday parties, see movies in the threatre- but in reality, doing all of these things for too long overstimulates him & he can't cope with the resulting sensory & emotional overload. It triggers OCD thoughts & tics & overwhelming emotions. It feels, viscerally, like we have a teenager & a two-year-old simultaneously. How do we help him understand & accept that he can't keep doing what he wants to do? How do we help him to learn to recognise the signs of overload & remove himself from the stimulus, even though he doesn't want to? This is the gap I've been seeing more & more clearly, between Brendan's cognitive functioning & his emotional functioning, & it just gets wider as he gets older. I am reminded of how it felt when Brendan was younger- kindergarten & first grade- & I'd let him play outside for an hour after school, then make him come inside & watch tv (PBS & videos, of course) for the rest of the afternoon. I felt like the mom from hell- how absurd, to take your kid out of the fresh air & sunshine & tell him to sit & watch tv... But this was the only way that Brendan was able to cope with the rest of the day in relative peace & capableness. Now I feel like we're facing this whole thing again, but exponentially. He's bigger, more definite about what he wants to do, more driven to be social- all good things. He's also much more likely to balk when asked to transition from what he wants to do, to get hurt during a meltdown, & the emotional pain seems much more acute these days, with the added power of the OCD. He says he wants to die when he's in this kind of pain & this is terribly scary. We feel a very real fear that we may lose him someday to this impulse.

The upshot of it all is that I feel oppressed whenever I feel I'm being told that I "should" have a certain attitude toward raising my autistic son. Those who would minimise his & our difficulties by trying to compare them to those of being or raising a non-verbal autistic child are missing the point- Brendan's difficulties are real. His experiences are real & to describe him as "high-functioning autistic" has no value to him, personally. It oppresses him & us. It says "look how well off you are compared to this other person". He's still an apple in a world that values & prefers oranges. To tell him that he's a better-tasting (in some people's view) apple doesn't make things better. This relative valuation also gives messages about whose life is potentially more satisfying. It tells us that we should be happier because of our son's relative functioning, & that's just not right or true. I believe that anyone can be happy with any child, if they accept them for who they are & are willing to engage life fully with them- not from above & looking down on them, not from below & pushing them where they don't want to go. My life with Brendan is full of many things- most of them good, many of them wonderful. This doesn't mean that I am in Pollyanna unquestioning acquiescence of everything that happens. I hurt for Brendan, I worry about him. I occasionally let myself worry about the future (I'm trying to practise the buddhist concept of non-attatchment, for sanity's sake if nothing else). He challenges, me, too- my assumptions have to be rethought all the time. Thoughful comments in this blog often open my mind to things even my semi-aspie mind haven't imagined about where Brendan's at & why he does what he does. Charlie & I find life almost too full sometimes, but we are fully engaged with each other & with our child. There is great power & meaning in such engagement with life.

So... I am hurting from Brendan's difficult weekend (& somewhat difficult morning at school- I got a call & talked to him a bit after he was overwhelmed by tics at school). Somehow this hurt got me thinking about the messages we give & receive about autism & our children & families. And maybe, too, about life. To aspire to a pain-free life seems to me to be a waste of time & effort, & also foolish. Look what we learn from pain. To be angry about the pain is also fruitless. Through the pain I can still say that I love my kid no matter how he is. His life is very precious. I can worry terribly about losing him, but still see how important it is to help him learn, as much as possible, to launch himself beyond us. He is very courageous. He keeps trying- tells dumb jokes, jumps down the stairs, looks forward to the next event at Adventure Quest, sits at the girls table at lunch... he takes risks. He models such good behaviour for me, so what can I do but follow & love his & our lives together ?

Atypical autistic development?

I was reading a couple of posts today that got me thinking...

Friend mcewen, in this post talks (in typical self-depricatory fashion) about the system that's worked best to jumpstart her 2 boys socially & verbally. Not only does it seem heroic to me (with just one autistic kid) that she was working with both at the same time (go girl!) but it made me reflect on our journey with Brendan & how he seems to be doing this autism thing, well, backward. This post by Kristina also led me to think back on what we were told Brendan would or wouldn't accomplish, vs what he has accomplished, & that reflection also made me realise that Brendan's path is not what might be called "typical", even by atypical standards...

There is no question in our minds, knowing what we do now, that Brendan has been autistic from birth. He was a high-needs baby who literally could not be put down (unless already sleeping) until he was 5 months old. He needed to be rocked to sleep every night & did not sleep through the night until he was 2 1/2. Charlie & I adapted to him. We never tried to "Ferberise" him, finding that the night-parenting methods of Dr. Sears fit better with our philosophy, although it was a challenge. Brendan was never a "terrible two" in that he rarely tantrummed, but his needs for constant diversion & his uneven development (although he hit all the developmental milestones on time) made him a very intense child. He had a small but eloquent vocabulary of baby signs that we taught him at around 10 months, which he lost completely at 14 months when he began learning to walk. After he'd mastered walking, at about 17 months, he began speaking & quickly moved from single words to sentences. He was very imaginative but rarely played with toys, so depended on us as his playmates. When he was around 3 1/2 he began having difficulty with transitions, particularly with leaving places he wanted to be (like toy stores & playgrounds). He would scream for long periods of time & sometimes run in circles until he fell exhausted on the floor when he was upset. We started to use the time-out system (from the "1-2-3 Magic" book) to help him learn to self-regulate, but sometimes had to adapt things to his quirks. I remember having to time him out on the landing of our stairs because if we put him in his room he'd trash it (at 4 years of age) & if we put him in a chair he wouldn't stay there. Because Brendan was so verbal we knew he understood what was going on & he could give us a fair amount of information about how he was feeling, too. Up until he was about 5 we thought that we just had a "spirited child" on our hands & were not aware of any of his developmental delays or visual/perceptual difficulties (although in retrospect it all makes sense). He didn't like colouring or drawing very much, choosing to use just one colour & scribbling when asked to draw. Although he wasn't getting any formal therapy before the age of 5 (since we didn't realise he needed any) we were with him constantly when he was not in school. He rarely watched tv alone because one of us would watch with him, whether PBS or a video, & we would discuss what we watched afterward. Although our time with Brendan wasn't structured, like a therapy would be, we structured his life securely around him because that was how he functioned best.

When we began to discover that he had severe developmental delays, the summer Brendan was 5, no-one ever told us that there were things he "would never" accomplish. The only "never" was that we were told that no child from our school district had ever received on-site therapy services at the private school he attended for kindergarten. The initial plan was to bus him, 3 times a week, in the middle of the school day, to another school where he'd receive OT & PT. Being very inexperienced with "the system" we weren't happy about this, but didn't know what to do. When we asked a friend who is an education lawyer if this was acceptable legally, he told us that the laws in NYS are pretty ambiguous about how & where therapy must be given. It took a compassionate person in our school district's special ed. services department to realise that busing him to another school "wasn't in his best interest" & she decided to make it possible for him to get on-site services. The school was delighted, since it meant that they had a precedent & could argue for other kids from our district getting on-site services as well. It wasn't until that fall of his kindergarten year, after OT & PT had begun, & Brendan began to perseveratively whack himself in the stomach, that we could really see that Brendan was behaving differently from most kids. Up until that time whatever he did seemed to us to be within the realm of "normal". We also noticed, after taking him to his second movie in a theatre at age 5, that he couldn't cope with the intensity & noise, so we just stopped taking him to theatres. No big. :)

Even when Brendan was diagnosed with Aspergers, the following summer when he was 6, the idea of his possibly never accomplishing something was never brought up. I guess we were lucky :) The focus was on getting him the proper therapies & school interventions so that he'd do the best he could. The pediatric neurologist did tell us that he would probably develop Tourettes (& he did, 3 years later) & was concerned enough about depression to want to put him on anti-depressants at the time, but we were not keen to do that, since he seemed to be functioning just fine to us. It wasn't until Brendan developed Obsessive-Compulsive Disorder 2 years later that we needed to resort to anti-depressants to help him cope.

A snapshot of Brendan at age 7 1/2, just before the OCD became a major player, would show an imaginative, highly verbal child, with poor social skills, poor fine-motor skills, proprioceptive & motor-planning issues, & emerging visual/perceptual skills (thanks to intensive therapy). Although he had difficulty functioning at school (he wanted to be under a table most of the time) his first grade teacher, Paula, had the skills to bring out the best in him & really help him learn to function there. (Paula's skills came from not only being an experienced teacher, but from raising a son with autism as well.) Brendan started out in second grade doing the best he'd ever done with schoolwork (he could now see & track visually well enough to read & write). He seemed to enjoy many things in life- legos (which he could now build with independantly, thanks to the new visual skills), building with blocks, learning to ride a bike, & he was doing more socially with friends, like going to his first sleepover. He developed a great interest in Harry Potter & was very keen to discuss his theories about the mysteries in the books. Although very imaginative, he still mostly made legos for the sake of putting them together, although he sometimes set up tableaus illustrating scenes from HP or Bionicles stories.

Just around his 8th birthday Brendan began having trouble making decisions, getting terribly upset he'd make the "wrong" decision & sometimes becoming paralysed by decisions. He started getting extrememly agitated & frightened when he saw spiders & developed fears about touching certain things. We were (fortunately) working with our present child psychologist, who we'd started to see to help us deal with the perseverative behaviours when he was 5, & were able to get in to see him a little sooner than usual. He identified these new behaviours as OCD & recommended that we see a child psychiatrist. We also happened to see Brendan's pediatrician around that time, & it turned out that her research specialty was OCD. She loaded us up with information & materials, which we really appreciated. One thing that she told us was that 8 years old is often the time when OCD shows up in children, which we found very interesting. The summer after the OCD began was very, very difficult. Brendan's functioning became more & more limited. He developed fears & phobias at an incredible rate. He had psychotic episodes where he was so revved-up by the fear that he'd thrash around, hit himself, whack his head on things, scream, cry uncontrollably. It was heartbreaking. The evenings were the worst time of day for him & we nearly called an ambulance 3 times that summer because he was hurting himself & we weren't sure we could calm him down (although we finally did). He had enormous trouble falling alseep. His psychiatrist had him try anti-depressants at first (prozac), but he didn't tolerate a high enough dose (they would rev him up even more) to really help, although we could never completely withdraw him from them either, since that would cause frezied behaviour, too. Brendan developed a fear of not only spiders, but of anything that had touched a spider. When Charlie picked up a spider in a kleenex to dispose of it, Brendan noticed which hand he used & wouldn't allow him to touch him with that hand. He developed an aversion to his thumbs, particularly to the nails, & wouldn't hold anything using his thumbs. We found that if I taped his thumbs with surgical tape he did better, so we spent the summer doing that. He dropped things all the time because of his awkward, thumbless grasp. He couldn't write like that, either. He became extremely sensitive to touch & to certain smells & by the end of the summer I was the only person who could hug him. Charlie could touch Brendan's foot with his right foot. That was it. Grammie had to back-off with the hugs & kisses & she did an admirable job of holding back. I couldn't wear any perfume or use soap that wasn't herbally-based. If we had a sitter stay with Brendan they couldn't touch his bed or he wouldn't get into it (we found this out the hard way) & I would have to change the sheets before he'd get into bed. We did discover that one of my herbally-based sprays would "sanitise" things so he could tolerate them, particularly if there was an unacceptable odour there or if it had been touched by someone else. Finally, Brendan's psychiatrist recommended that we try seroquel when it became obvious that prozac wasn't going to give him enough relief. Brendan responded immediately. He was calmer & the fears began to abate, although he was still hemmed-in. When he started 3rd grade we brought in a can of the spray for them to use, so that he could overcome the many OCD triggers there. He began working much more with the consultant (special ed.) teacher because he couldn't stay on the classroom & finally the school asked our disrict to modify Brendan's IEP to include time with the consultant teacher (which they did). Another child's aide wore very perfumy lotion & because of this he developed his first aversion specifically related to a person. On the plus side, his teachers were able to help him sit down & explain to the aide why he ran away whenever he saw her, which was a great lesson in self-advocacy, & she sweetly responded by changing the lotion she wore at school. On the down side, Brendan broadened the aversion to any middle-aged african-amercian woman he saw, which has caused some misunderstandings ever since- how do you explain that your kid is not racist? However, when people could see just how specific the aversion was (Brendan's godfather was african-american as is his music teacher & he has no trouble with them at all, nor was he bothered by our young, female, african-carribbean music director at church) it became understandable, although this is the first time I've written about this, & sometimes it still feels like a "dirty little secret"...sigh.

It has been 3 years since this phase of our lives began. When the OCD became the major issue neither Charlie nor myself saw it as part of Brendan's autism, & in fact, the Aspergers became almost irrelevant in light of the changes the OCD had made in our lives. Until about a year ago I thought that the OCD was something to "fight" & "defeat" & I feel a bit ashamed of this. If I have any understanding of parents who say they hate their child's autism, it's due to our struggle with Brendan's OCD. It's very hard to have any positive feelings at all about something that causes your child (& you) so much pain. About a 1 1/2 years ago, though, Brendan also developed Tourettes, with most (but not all) of his tics being directly connected to OCD thoughts. We remembered that Brendan's neurologist had told us that this might happen, & we realised that we were not dealing with separate "diseases" within one brain, but a related set of neurological differences, which we have now come to see as falling under the umbrella of Brendan's particular brand of autism. The professionals we deal with (almost literally) day-to-day, Brendan's psychiatrist & psychologist, have never disputed this perception/perspective. Perhaps they see that this is what works for us... or perhaps they agree with us. Nobody's disagreed yet :)

To get back to where I started this trip down memory lane, Brendan's unique journey with autism seems to have taken him from being pretty functional (highly verbal, imaginative, articulate, not too many aversions to food/noise/odours) to relatively less functional as he's gotten older. He is certainly just as imaginative, verbal, & articulate as he ever was, & has added insightful to the list as well. But he is much more highly reactive to noises, tastes, smells, sensations than he's ever been in his life. He's highly reactive to his environment as well, thanks to the OCD, & far more disruptive than he was in kindergarten, thanks to the Tourettes. His learning difficulties are almost solely related to the OCD, although his resistance to using a keyboard has led us to what would have been a more functional alternative anyway, voice-recognition software, so there's a tick on the side of OCD :) Do I see all of this as the much-touted "autistic regression"? No, I don't. When Brendan's pediatrician told us that age 8 is the classic onset time for OCD, it made me wonder if that wasn't due to this being the prime age for things to get much more complicated developmentally. In Brendan's school, the classes are grouped developmentally, with K-1, 3-4, 5-6, & 7-8 graders taught together. But within the past 10 years it was determined that 2nd graders have very specific developmental needs that are best met if they are grouped only with 2nd graders. I really can see how many more demands are put on the kids as they get older. It didn't really surprise me that the transition to 5th grade this year has been very difficult for Brendan, & it's taking pretty much to the end of the year for him to settle into being in 5th grade... good thing he's with the same basic group next year, too! At home, I can see Brendan accomplishing some very developmentally-appropriate milestones- making his own breakfast, learning to use a knife, learning to use timers to help him self-regulate. But he also needs much more structure than the average nearly-11-year-old. He did begin to imaginatively play on his own with his legos (not just build them) around age 9, but these days the OCD interferes so much that playing on his own doesn't provide enough structure to overcome the thoughts & enjoy himself. His favourite play-time activity these days, other than the highly-structured online games he loves, is to play legos with dad. We've come to understand that Brendan doesn't trust other kids to play this way with him, & he seems to really crave the lego time with Charlie, who is fun & trustworthy, too. I love hearing the two of them playing upstairs, & I really admire my husband's patience & flexibility to give this time to Brendan, when most other dads with boys this age are moving onto more sophisticated pasttimes. Not to say they're not getting more sophisticated, as shown by their first-place finish in Brendan's first-ever stint crewing for dad in a sailboat race...

When it comes to wondering what or if Brendan will ever do certain things- go to college, get married, live independantly- basically we don't think that far ahead very often. It's not because we assume he will, though... right now these things feel as though they depend on so many variables that it would be just as valid to flip a coin to find out. This afternoon I'll be meeting with Brendan's music teacher to help him understand why Brendan's functioning is so variable in music class this year. Brendan has had this same teacher for music for the past 2 1/2 years, so the necessity for this meeting just underlines for me how much trouble Brendan is having adapting to the complexity of life as he gets older. Some of his biggest enemies right now are the assumptions that are made about how he should function... This is not to say that we feel hopeless about Brendan's future, nor are we any less than proud of the amazing young man that we are raising. I believe that, somehow, he will find the right niche for him that will give him a happy & productive life. In fact, that's what we've always been about, even before we discovered that he's autistic. "Nuff said!! :)